Happy 7 Birthday

She would have been 7 today. I've been thinking to myself over and over, "It's her birthday" because it seems less and less real every year. Just as at first the horror of her death was inescapable, now her absence is even more inescapable. The danger of moving away from grief is that you always move away from the one you grieve, as if it is grieve itself that keeps you near. I hate that though, she wouldn't want us to remember her death. But she was so young when she died, there isn't much of her life to remember.

I realized over the weekend that my son is now older than she was when she died. We have officially passed through what I think of as the dangerous time. And in doing so have left her behind in yet another way.

I've also left behind the idea that people will forever think of me as that poor woman who lost her daughter. It's a part of me, but not who I am. I am not my job, I am not that woman who had breast cancer, I am not that woman who lost her daughter.

I saw this picture on the Michael J. Fox website for his foundation. And that said what I've been trying to sort out for years--what happens to us isn't who we are, it's what we do in response. Yes, yes, and yes.

This year, I will again have dinner with my family, and our former nanny's family (which now includes a husband and baby). We'll send my girl 7 red balloons, and eat cupcakes in her honor. 

I've been remembering some things about her, little things we did together, little things she did. I remember taking her to the store one day, and the Colbie Caillat song "Bubbly" came on. She swayed back and forth gently, it was a perfect embodiment of the words of the song. I still look back and expect to see her in her carseat doing that whenever the song comes on. When I was pregnant with her little sister, I came down for breakfast one day. She and her dad had already eaten, but as soon as I started eating, she said "Bite?" And took a giant bite out of my bagel. While at a birthday party at a local bounce place for her best friend, she sat in the room while presents were opened. At some random point (well before the end) during the process, she said, "All done!" and jumped out and ran out of the room. A couple of months later, we had Christmas Eve dinner with friends (her best friend's family) and when my friend told everyone to sit down, my daughter did--right in my friend's lap. She wasn't all that snuggly, so it was a surprise to see her do that.

These are moments not captured in pictures or video. And they, like the pictures and video, are bits and pieces disembodied from a life. I hate that they will forever be out of context. Two of my friends have girls that are close to the ages of my two girls. It absolutely breaks my heart to see pictures of them. I actually avoid looking at times, but in some way, it's nice to see how my girls would have been. I didn't have a sister and was excited to see how my girls would have each other.

My second born has risen to the task of being the big sister. She and her brother are so close, he actually told me one day that she is his best friend. I wish she had a big sister here too, though she does seem to understand that she does have a big sister, she just can't see or talk to her like she can her brother.

I still get a lump in my throat thinking of all this. I posted a video of my girl on my FB page today for my friends to see, so those who didn't meet her can get to know her. A few people I've met more recently have asked about her, how she died, etc. And I'm completely open and honest. I'm not just that woman who lost her daughter. I think they know that, even though they haven't known me for long. I'm glad to talk about her, I always will.

Misery Loves Company, For a While

Tomorrow is my very last day of radiation. It'll be the 30th session. I had a lumpectomy on July 26 and start radiation on October 10. After this, I make the rounds of my doctors again (surgical breast oncologist, oncologist, radiation oncologist) and at some point, start taking tamoxifen.

Yesterday, I told my husband I'm ready for this year to be over and am hoping next year is better. He agreed, and said something about how his Chinese horoscope said it would be a really bad year. At first I thought, "Well, it wasn't really a bad year for YOU." But of course cancer happens to families, in some ways. Still, I don't think of this as the worst year ever. Maybe if it had been worse, if I'd had chemo too, or it had affected other areas of my life more than it did...I don't know, I just don't think of it as horrible. Not nearly as horrible as losing my daughter.

I realized that while I initially seek out those who are going through the same thing, I don't want to limit myself to just being with and talking to those people. When my daughter first died, I did seek out grief groups, other mothers who'd lost children, wanting to know that I wasn't the only one experiencing this. I think that comes from a desire to know others have lived through it, and wanting to know how. I told one mom, seeing her on the path ahead of me makes it a bit easier for me to keep walking it.

The thing is, I also need to look around and see others, people on different paths, and maybe to step onto those paths once in a while. After experiencing all of the things associated with breast cancer, the same seems to be true of another misfortune. I don't want to live in grief, or pain, or any of the other negatives. There are some who experience tragedy and continue to live in it forever. I don't want to, and maybe that's why I seek out others.

A friend asked me, shortly after my daughter died, whether I would feel more comfortable in a group of others who'd lost children. I told her that while I did need that sometimes, I also needed others because I didn't always want to be reminded of that. Ten months after my daughter's death, a friend from college, who I hadn't seen since I was pregnant with my firstborn, came to visit. His timing was perfect. Something about his appearance, his very presence, was comforting. He was the one who suggested I start this blog.

One of my old friends from high school said she'd read a study, something about how we have a desire to reconnect with those who knew us before...before we became the mother who lost a child, the divorced single mom, the breast cancer survivor, the mom of 5 children...whoever we are now. I saw a group of friends from high school recently, and while they know of these things that have happened to me, I somehow feel like their perspective of me is different than those whom I've met more recently. I like having all those different pairs of eyes look at me, see me in different ways.

I never try to escape or hide from the facts--I did lose my daughter, it sucks. I have breast cancer, and that sucks too. These will always be my realities. I'm also a mom of two young children. I'm a runner (well, not this month, but hopefully soon), a writer, a wife, and numerous other things. I want to be all of these, and not lose myself in the tragedies. Isolating myself, either completely or with others who are hiding in grief, would, I feel, prevent me from being anything but a grieving mother.

I looked recently at pictures of myself from the year after my daughter died. I won't lie, I look like hell. People asked at the time why I allowed others to take pictures. My second daughter was a baby, and that was her first year of life. I didn't want her to wonder why no one ever took pictures of us. She'll understand (I hope) someday why I looked so horrible, and why I let people take pictures anyway. And she'll also know that while I was miserable at first, eventually I moved forward.

"I'm Fine"

Breast cancer? Really? Because I haven't been through enough yet?

My first mammogram quickly became my second, then two ultrasounds. A week later, I had a biopsy and needle aspiration. On July 26, I had a lumpectomy and sentinel node biopsy. My lymph nodes are clear, but the small lump turned out to be microinvasive. As in, invasive cancer rather than precancerous as initially suspected. The tiny level of microinvasion puts me into a whole other class of treatments.

I'm currently awaiting the results of the BRCA 1 and 2 genetic test. I've seen the surgeon more times than I can count. Had my first appointment with the oncologist a couple of days ago. The gist of that appointment was that if the test is positive, bilateral mastectomy is probably my best choice. If not, radiation. And either way, at least 5 years of tamoxifen with its laundry list of potentially horrible side effects.

Did I mention I'm still recovering from surgery? It wasn't nearly as bad as my 3 c-sections, but having an incision right along where your bra strap hits is pretty awful. Wear just the wrong thing and by the end of the day, you're rubbed raw. And you can't move your arm around too much or it gets sore and swollen pretty much all the way around from your front to your back. So I haven't exercised much until this week. When I saw the surgeon a week after surgery, she asked when I'd return to work. My response: Um, I was supposed to take time off other than the day of the surgery?

I'm tired. Tired because my body is healing and because my mind is overwhelmed. As another woman put it, in addition to everything you're already doing, you also have to be "cancer patient," thinking about what to do next, researching treatments, diagnoses, etc.

Dr. Susan Love is a cancer researcher who last year was diagnosed with leukemia. She wrote a blog post describing why she doesn't like to be called a survivor. Her main point is that survivors have lived through something, something that is over. Cancer isn't ever over. It can come back, it can get worse, and it can kill you years after you thought you'd "survived" it.

Yesterday my surgeon said something about how tough it is to make decisions under pressure. This, however, is something I'm more than familiar with. As a friend put it, it sucks to be an expert on so many tragic things. I can talk to a parent whose lost a child and really understand, and now to other cancer patients. I would love to stop being the expert on tragedies. The experience does help in some ways. I know not to make decisions when I'm not thinking clearly and I'm very good at recognizing when I'm not/can't.

This is different than losing my daughter in so many ways. In that case, while we had to make a lot of decisions initially (memorial services, selling house, etc.) eventually all that was left was living with the grief. There are obviously things that make that worse, like her friends all starting first grade this year. But I don't have to make decisions anymore. Breast cancer, on the other hand, could require a series of decisions over the rest of my life. And ugh, I hate making decisions. After my daughter died, I tried not to make any because I questioned my judgment.

And the decisions I'm making now are like the worst type of gambling ever. The doctors rattle off one statistic after another, none of which applies EXACTLY to anyone, and you have to throw them all together in some sort of grotesque shaker so you can roll the dice. Out comes my choice and then I see what I win or lose.

I'm fine. When someone asks how you are, is that what you say? Most of us do. It seems though, that my parents and in-laws (perhaps as a result of their age?) have started being more honest. How are you? "Well, I had surgery for my gallstones and it didn't go quite right and I have to go back..." Not really what people expect to hear. I'm honest with my friends, those who I've kept updated about my treatment. I'll tell them now that I'm tired, wish I didn't have to deal with this. But usually, I say, I'm fine. I suppose it's my way of not overwhelming myself or anyone else with reality.

My Story

Recent events have made me wonder about my story. There are many, many events that have happened and I'm sure I record not only the actual things that happen but also the way I feel about them. When I tell others, am I really telling them the facts? Am I telling them what happened or am I describing the way I want them to think about me?

A friend has recently suffered yet another loss, on top of two other big ones she's managed to live through. I wonder how she will someday describe these things to someone new, someone who didn't witness them, because the way I see them and her reactions to them seem to be quite different from her perceptions of the events and her reactions. I also wonder now about the things she's described to me from her past, things that happened to her before we met. Were some of these more horrible for her than she lets on?

And in this, I realize that my story can be whatever I want it to be. For months after my daughter died, I didn't want to be that woman, that woman who lost her daughter. I feared that would be my entire identity. Over time, as I met new people, I didn't always tell them about her. I realized a couple of weeks ago that it's actually painful to me for someone to not know about her. If it's someone I'll never see again (e.g. saleslady at the mall) it doesn't matter, but someone I will see repeatedly, such as a neighbor, needs to know so that I'm free to talk about her whenever I need to.

So my story includes my daughter--the good, the bad, and the ugly of it all. It also includes everything I went through, which yes, is sad and horrible but is real. I can't claim to tell the "real" story, what someone simply reporting the facts might tell. But I hope I'm honest, I hope I convey my true feelings and the impact it's had and continues to have on me. I am strong, I can make it through days and weeks and even months now without feeling that impact. But for two years, I couldn't see straight because of the grief. There are things from that period of time that I don't remember and probably never will. Other things I wish I could forget.

My friend seems to be working hard to try to make her story as even as possible, despite all of the horrifying events that make her life full of more peaks and valleys than she might care to acknowledge. I don't want everyone in the world to see all of these in my life, but they're there, and I hope that at least I'm honest with myself and those closest to me about them.

The hardest day

I turned 40 this year and had my first mammogram last Friday. I've been wanting to get one for a while, and my OB initially suggested I start at age 35 because both my mother and her sister had breast cancer. Well, I was pregnant or breastfeeding basically from age 32 until last year, so it wasn't possible.

I wasn't afraid of getting it, didn't fear the squishing of my breast tissue or even the potential results of it all. It was supposed to take about an hour, with the radiologist reviewing and giving me the results during that hour. Well, it actually took 3 hours. They did one mammogram, saw some calcification and did another. They wanted to know more, so they did an ultrasound on one side and saw a cyst, so then they did another ultrasound of both sides. After all this, I finally met with the radiologist. He showed me the results and very carefully told me that basically the next step would be to do a needle biopsy and aspiration. The results show abnormalities, and with my family history, this is the usual course (yes, I used Dr. Google to check all this out).

Within a couple of hours of me getting back to the house, a nurse had called me to schedule the biopsy and gone over all the details. I'm going in this Friday for the hour-long procedure.

I'm not scared, and that feels bizarre. Shouldn't I be afraid? I can only come back to my usual mantra of this isn't the hardest thing I've ever had to do. That day is over, and while I may have to remember or talk about finding my daughter with her soul leaving her body, I never again have to relive that day. And whatever the results, something can be done. That wasn't the case that day.

I remember in the months after losing my daughter, I thought that if I were to fall sick, or get injured somehow, I wouldn't mind and wouldn't fight. That is definitely not the case now. I have another daughter to be here for, and a son. I have many years of life left ahead of me which I have to live to the fullest to make up for the daughter who won't.

The radiologist probably thought I was crazy for my reaction (OK, sounds good, let's do it!) but I'm guessing that'll be my reaction to pretty much anything. The only thing I fear at this point is losing my other children. There are so many bad things that can happen over the course of a lifetime, many of them beyond our control. I fear that, the lack of control, and maybe a day will come when something else horrible happens that I can't do anything about. Until then, I'll just keep saying, this isn't the worst or hardest thing I've ever done, so let's get on with it.

Remember Me

Four years. Four years ago today, I walked into my daughter's room and knew she was gone. Her little soul had left us before we even knew. Will I wake up every year on May 21 and be taken back to that day in 2009? I'm able now, after all this time, to stop myself from being dragged to a time and place where I don't need to be. I spent so much time and energy in the year or two after her death remembering every moment over and over again, my head and heart trying to make sense of it all. I finally got to a place where I realized I need to live, not experience her death over and over. I can usually stop myself from going back, from seeing the events of that day and the weeks that followed.

And yes, I do feel the guilt. I remind myself she wouldn't want me to be there. She would probably want me to remember her playing with her best friend, when they were babies and when they were older. She'd want me to remember the trips to the park, to the children's museum, or to restaurants (she loved to eat). She'd want me to be here, be present with her younger brother and sister. And I am. I'm here for them, I'm here for me. For this life, given to me, which I have to make the most of because now I feel I'm making up for the one she lost.

And what do I want? At her memorial, I spoke, amazingly enough. I can't believe now that I was able to get up and speak. Speaking up for myself is something I've always been able to do, at least, after a certain point in my life. Before that, it was about the last thing I was able to do. I spoke up for her at the service, and I asked everyone to remember her. I asked that they let me talk about her in the years to come, and that they tell me their memories, that they remember or think about her.

It surprises me who has done that. A friend told me that I would be surprised; that those I would expect to be there wouldn't, and others would come forward. And they did, and they have.

On this day, remembering my girl, I will try to keep those good memories of her in my mind, above the memories of the day I lost her. I welcome messages from those who remember her, or at least are thinking of her and those who miss her.

Remember me, remember my girl.